Shared decision-making aid for juvenile idiopathic arthritis: moving from informative patient education to interactive critical thinking
Shared decision-making aid for juvenile idiopathic arthritis: moving from informative patient education to interactive critical thinking
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DOI：
10.1007/s10067-019-04687-y
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发表时间：
2019-11-01
影响因子：
3.4
通讯作者：
Wassif, Ghada
中科院分区：
文献类型：
--
作者：
El Miedany, Yasser;El Gaafary, M.;Wassif, Ghada
目标 开发和评估一种针对幼年特发性关节炎儿童的图解式、独立式、交互式基于证据的共享决策 (SDM) 辅助工具；它能够让幼年特发性关节炎患者积极参与自己的管理，并对其治疗依从性、缺课率和治疗结果产生影响。方法 SDM 援助旨在提供有关疾病、治疗风险和益处的信息。多学科团队根据国际标准 (IPDAS) 定义了 SDM 标准。八个类别对 SDM 非常重要。每个类别都配有交互式风格的简单插图。在每个类别的最后，要求孩子根据给出的信息做出决定。在一项随机对照研究中，向 94 名幼年特发性关节炎儿童提供了该工具，与按照标准方案治疗的 95 名幼年特发性关节炎患者组成的对照组进行比较。结果共有97.5%的研究儿童的理解能力达到90%以上。在治疗 12 个月时，SDM 组患者对治疗的依从性显着较高（p < 0.01），而对照组因不耐受而停止 DMARD 的情况显着较高。 SDM 组患者报告的结果有显着改善，对照组缺勤率显着更高 (p < 0.01)。结论 开发的 SDM 援助为儿童提供了有关治疗方案利弊的循证信息，提高了他们对疾病的了解以及做出明智决定的能力，这反映在他们对治疗的依从性和更好的治疗结果上。
Objectives To develop and evaluate an illustrated, stand-alone, interactive evidence-based shared decision making (SDM) aid for JIA children; its ability to produce positive perceived involvement of JIA patients in their own management and its impact on their adherence to therapy, school absenteeism and treatment outcomes. Methods The SDM aid was developed to offer information about the disease, risks and benefits of treatment. A multidisciplinary team defined SDM criteria based on international standards (IPDAS). Eight categories emerged as highly important for SDM. Each category was supported by simple illustrations in an interactive style. At the end of each category, the child is asked to make a decision in view of the information given. Ninety-four JIA children were provided with the tool, in a randomised controlled study, in comparison to a control group of 95 JIA patients treated according to standard protocols. Results A total of 97.5% of the study children reported comprehensibility of more than 90%. The patients' adherence to therapy was significantly (p < 0.01) higher in the SDM group, whereas stopping DMARDs for intolerability was significantly higher in the control group at 12 months of treatment. There was a significant improvement in the patient-reported outcomes in the SDM group, and absence from school was significantly higher in the control group (p < 0.01). Conclusions The developed SDM aid offered the children evidence-based information about the pros and cons of treatment options and improved their understanding of the disease and their ability to make an informed decision that is reflected on their adherence to therapy and better treatment outcomes.